The story of Emma's journey of neurofibromatosis brain tumors and blindness.

Thursday, December 26, 2013

The Journey Begins - The Diagnosis

It all started in October, Brad mentioned that Emma's right eye might be lazy. I never saw her eye do anything abnormal so we brushed it off. A week later we were looking at pictures from the pumpkin patch and Brad pointed to one of Emma where her eye was clearly off in a different direction. Concerned we added extra eye care coverage to our insurance plan and waited for our new health insurance to send us cards. A couple weeks later we were at the pediatric ophthalmologist.

The doctor was very concerned about Emma's eye and referred us to UC Davis for more specialized tests on her eye. Since we were right before the holidays they said it would be three to four weeks before she could be seen. Not willing to wait that long we transferred to The Children's Hospital of Madera and grabbed an appointment on Christmas Eve for an MRI and consult with a pediatric neurologist.

What they don't tell you about a ten AM MRI is you check in two hours before at 8:00 and adding in an hour and a half for driving and the extra time to drop off Gracie at our dear friends house we were up long before the sun.

Emma had an X-ray and then had to be put under for the MRI. Everyone at Children's was amazing. The nurses brought her toys and were very accommodating to my wishes to calm her down with essential oils. After the MRI we traveled to the pediatric neurologist.

The neurologist knew right away that Emma has neurofibromatosis. He showed us MRI pictures of a large tumor wrapped around her optic nerve. It sits above and behind her eye pushing it out of the socket then travels through the center of her brain and down.

He said they would never operate because it would make her blind but it would also be much too

dangerous and invasive. It does need to be shrieked down in size because it is growing at an alarming rate. He referred us to an oncologist for chemotherapy and a genetic specialist to find out which type of neurofibromatosis she has since there are two kinds.

The future will be hard, we will have many appointments and poor little Emma will undergo one of the hardest treatments you can do on a person. Many people have offered to help us and we are so thankful for their love and support. For now we need help with,
- distraction: over thinking this will not be good, please help distract us and keep us the fun kind of busy. Unless we ask for a quiet day at home assume we would love to play. If Brad or I seem "strong" or "doing okay" it's all a front, we are heartbroken.
- prayer: we need all the help we can get. Please add Emma and our family to your daily prayers or prayer chains.
- help: if you have the ability to watch Gracie while we take a Emma to the hospital for an appointment please contact us with times you are free.
- be careful about scary questions: we are barely holding it together, we know you have questions and

we do as well. We ask that you please be careful about asking the questions that already haunt us like if she will loose her hair, will it work and what her future looks like. One of the reasons we started this blog is so everyone cat get the information with out us repeating it over and over.

A huge thank you to all our lovely friends who have already brought us food, watched Gracie, prayed with us and sent Emma toys for the hospital. We feel so blessed to be surrounded by so much love.